Planting a seed of hope

There is something about taking a moment to be still. To meditate with a coffee (it’s a thing…or maybe I’ll make it a thing!). The warmth of the cup in my hands; the sweet caffeine feeding my addiction; taking time to sit and savour it. Usually it would be an opportunity to relax except I did all of this so my head didn’t explode with a stress induced eruption of frustration and bile.

The disability sector is full of great people…humans living their best lives. Unfortunately, we work within a system that often sucks. (Not eloquent I know but…). Last Thursday had the potential to be wonderful, as every day does.  But it wasn’t. Bureaucratic bull won and my girl lost. Not forever…oh no. The fight will continue. It will. But I am weary. The battle is long, constant and draining. The adversary is steadfast and tied to their own rules. Did I mention that I am weary?

The next morning I picked up my weapons prepared to battle again. Instead I paused to called the one person who crossed no mans land for us and thank her. I also voiced frustration at the processes that fell apart and the person I believe dropped the ball. She listened. She agreed it was unacceptable. She worked hard to find a suitable solution. She is not the enemy but an empathetic human working within constraints set by people way above ground level. She still has faith in the scheme she is implementing so I shall try to as well.

I took a couple of days to regroup. The battle plan needed review to head into the next week fully armed but hoping for peace. It seems absurd that an war analogy is so fitting. In an ideal world we would hope our children could access the necessities of life even if we, as parents, were unable to provide them at times. This utopia would see us all looking after each other. Human dignity would be held in high esteem. Our girl has brought many fine people into our lives who aspire to all that is just and good. People who have blessed us with their friendship and generosity. So the battle continues but with the realisation that even the system is not the enemy. It is put in place to aim for fairness and hope for equality. It may not be perfect and the stress of working within in is certainly taking it’s toll but we live in a place of hope.

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HIE, Our Story

April is HIE awareness month. It also holds the anniversary of my first encounter with this thing I could barely pronounce much less understand. Hypoxic Ischemic Encephalopathy. It took a while to learn to spell it and understand it. And even longer to embrace it.

HIE robbed me of the relaxed early parenting experience I surely deserved for number two child. It threw us into a whirlwind of hospitals and appointments, tube feeds and medication. There were so many questions about our girls future, and ours, and very few answers. “She might…. She probably won’t…” My girls’ brain injury was severe, so her prognosis wasn’t flash. But as much as the medical-ese wasn’t measurable, neither was her spirit. Once she began to escape the swelling of her brain her light started to shine. Even so, it was difficult to picture a future for her which was independent of me.

The awareness catch phrase is “Hope for HIE”. It is difficult to reconcile those two terms at times but last week I could. Hope is having a glimpse into the future and it looks bloody fantastic. I used to be scared to look ahead. So scared. Life was doable if I stayed in the moment.  HIE has such varied outcomes for kids that the picture of an older child wasn’t necessarily where my child was heading so the unknown possibilities were terrifying. Then a young bloke and his dad lifted my hope to that ethereal place somewhere in the rafters.

I shall refrain from using the “I” word for they are ordinary people like you and I and often the idea of being “an inspiration” weighs heavily. The promise I gained from them was wrapped in their ordinariness. They live life with all of it’s joys and disappointments and the many road blocks along the way. But they kept looking for ways to fulfilment…and still do. The dad is bravely listening to his (big) kid and letting him take the lead. This young man has some mad switching skills along with incredible know how and fierce determination…and a wicked sense of humour. He has made his own career with his dad (and the rest of his family)  cheering him along. The key to this young man’s light shining through? Assistive technology.

Obstacles tend to fall in your path if you need wheels to get around…sometimes literally. When you speaking voice is unclear that multiplies enormously. The assumption that having no voice means you have nothing to say, is unfortunately still common. An eye gaze communication device is helping dispel that myth for my girl.  Switch access options to things like household appliances and computers are taking that a whole lot further and give more choice and control than ever before. This young bloke and his dad reminded me that good, ordinary people are taking steps forward for us all. And aren’t they fabulous people to walk this path alongside…even from a distance.

The days of people like my child being locked in an institution are in the past (mostly). The time of people assuming she should have no choice in her education and only be suited to a “special” or being kept at home are waning. The day when she can work and play in any setting she chooses with the assumption she is more than competent to do so is coming…I hope. The technology to help her achieve that is here and improving all of the time. I place my hope in my kid. She will be the one to know what she wants and have the grit to get it. I remember what she said about Stephen Hawking in an assignment last year…..”he clever because his disability. It make him think differently.” When I see her life as a straight line with speed humps she will see the wiggles she needs to get around those suckers. Hope is her.

 

 

Ho, ho ho…Merry Equipment

Funding. There, I said it. The very word can invoke nervous laughter from funding applications past. The NDIS promises a better system but the transition over to it is proving to be a quite a process. Change isn’t easy. But it’s ok, I have a solution. Santa.

Think about it. He has plenty of workers with centuries of experience, He has a fail proof delivery system that always…yes always…delivers on time. There may have to be some adjustments to the only-once-a-year thing but it’s doable. And, possibly the best bit, there would be hardly any paperwork. Simply one letter of wishes politely written with a promise to eat your veggies and tidy your room.

No more would we have to think of five year goals for our severely disabled two year old just to get a wheelchair. No longer shall we impart all but our knicker size with not so much as a coffee date first. No more forms! A carrot might be a nice incentive though…plus some cookies and milk. And painting the darkest picture of your child on their worst day to be deserving? No way. He’s a jolly old fellow. A “Santa please stop here” sign should do the trick. There would be no more wondering how long your teenager can fit in a wheelchair she’s had for four years…Santa would give a delivery date and stick to it. Oh the possibilities. New AFOs with little sleigh bells. A walker lit up with Rudolph style nose. A shower chair as soft as Santa’s hat.

So we’d better watch out, we won’t have to cry, Santa Claus is coming right now! What are you wishing for??

 

Another Day, a Little More Insight

I have a confession to make. When our girl was born I did not know cerebral palsy. I had heard of it, sure, but was oblivious to what it meant for her…and for us. I didn’t know what it looked like. Yes, that’s where I was at in my post birth, crazy grieving state. I wanted to know what cerebral palsy looked like.

So I asked. The only person with knowledge I could trust with such a question. My lifelong friend (who is an OT) said…well I can’t remember her exact words anymore. A lot of that time is hazy. She did reassure me. The feeling I remember from that conversation is that my girl will look like herself. That CP has no discernible features and even if it did that we will be ok. Looking back I am astounded by my lack of knowledge. But I use this experience now. If anyone asks an apologetic question about Missy I’m able to truthfully say that I too didn’t know this, once.

Now I reckon I could see signs of CP in a baby before a doctor (exactly as one experienced mumma once saw in my girl)…not because there is a “look”, but there are signs. Now I celebrate the lessons and people this kid has brought to us. So, on International Day of People with a Disability it’s not simply about generating awareness for me but a celebration of some of who our gorgeous girl is. She is a kid first…a friend…a thinker…a sister…a joker…a daughter and a kid with CP.

In her words of reflection back on World CP Day….. “Am thinking I have an idea. The universe chose me to be different. I answer, I feel (the) same. I understand. I want to do what the others are doing thank you. I’m ready. You need my cerebral palsy to help you world. Think; come alive; give love; be better friend; be you. (I) can be proud.”

So very proud, kid.

Carers Count

Recently I applied for a job. There was quite a gap in my CV employment history…14 years worth. I debated the idea of putting “caring for my child” as an occupation. It certainly consumes my time but is it a job? The idea that I, as a carer, thought this gig was not worthy of being on a resume seems ludicrous. It’s also a very good reason why the theme of Carer’s Week this year was Carers Count.

Carers Week may be a lovely idea but it didn’t change what I had to do that week. I didn’t go to any events. The care always needs to continue. I did manage a coincidental catch up with a lovely bunch of mums of kids with complex needs. My hope is that there was enough media exposure to have people pause and think about what we do. That maybe some call centre workers who, when told my occupation is carer, will refrain from redefining it as “house duties”. Sigh…maybe. I often explain to people that a lot of what I do is parenting. But it is much more than that.

To fill the shoes of unpaid carers with paid workers would cost $60.3 billion in Australia annually. That is over one b i l l i o n dollars a week! A week! It’s any wonder we’re all tired. I imagine you’ve heard it all before but it is a constant slog. There are always calls to make, emails to follow up, extra cleaning to be done….and that’s when she is at school. The prospect of the NDIS gives hope that carers will be able to be more well supported in their roles. Hopefully we will be supported enough to enable some self care…and maybe use our collective and unique skills to work outside of caring.

I didn’t get that particular job but I did gain a different perspective on the value of what I do every day. I have learnt so much. I can multitask like a breast-feeding-fire-twirler-doing-a-load-of-washing. (I’m not sure where that came from either!) I’m a manager. I’m a personal assistant. I fill the roles of disability support worker and therapist. I speak the medical lingo like a pro…I know this for sure because I did a Facebook quiz! So I sat up straight and proud and put “carer” on my resume. Anyone hiring?

Punched in the gut

The girl has been a bit difficult this week. Hoisting her in and out of bed is a challenge when legs are kicking and her dystonic body is arching. A few support workers have needed to call in the reinforcements (a.k.a. mum) in the last few days. But what happens when the reinforcer needs help? Grumpiness that’s what! And then…heartbreak.

I thought the worst thing was having so much trouble getting her in her wheelchair; that her squirming and pushing until my back hurt was difficult. That was until she told me why. She’s a smart kid. She can be so helpful. She can make her crazy body cooperate. So I asked her why she had been so difficult. (Because) “I’m telling you something I born different”.

I felt the world stop and the tears start. She looked at me like she thought I want her to be different and my heart broke. Her eyes spoke of a body that fights a daily struggle between what she wants to do and what her brain lets her. And all I could do was hug her and sob apologies.

Of course I don’t want her to be different, not for me anyway. For her I would take away the pain and challenges if I could and if she wanted me to. The thing is, this kid is way more accepting of who she is than most people would give her credit for…even her old mum some days. The challenges remain. She is fourteen now…and tall. I am short with a stuffed back. These facts will often butt heads. There is no easy solution. Well she had one. “I have an idea. I am go away to friends house. Have play”.

It was a great idea. A sensible option from the kid. Some time apart to take a breath. But she can’t just go to a friends house.  It’s not that simple. (Aside from the fact that no one ever asks her…sigh). Giving her lunch is more complex than making an extra sandwich. Everything is more complex. So I bawled some more, we stayed home and figured out how to feel better together. Wii Dance is good for that.

I’m not sure why I was so staggered by her insight. I should know her better by now. I think it just hurt to hear. Because the grief never goes. And tonight, despite smashing out some moves to “Cake by the Ocean”, I’m feeling the weight of “different”.

Dumb

Missy had a speech therapist in her early intervention setting, at least I assume she did…I can’t actually picture a face or recall a name. The focus then was mainly her physical abilities and limitations and accessing equipment. She did have a very basic eye gaze board with a peep hole and two choices displayed. By the time she arrived at school that had progressed to four choices! Without a reliable nod or shake we interpreted her smiles to confirm what she was saying.

As a parent {and a highly strung one at that!} leaving the comfort of early intervention for school was a terrifying prospect. The school staff were familiar with the wide-eyed terror of newbies and were gentle. Two of the gentlest who cemented my choice of school were her teacher…and her speech therapist. In early intervention the physiotherapists had been my go to, her key worker and our safety net. This seemingly new breed of therapist presented  a simple Pragmatic Organisation Dynamic Display {{PODD}} book and my girls world changed.

I learnt from gentle-speech-who-gave-my-child-a-voice, let’s call her Miss Honey, to assume competence. If I thought she reacted…she did. If I thought I saw a choice made…I did. Previously I would have seen myself as my daughters biggest fan and greatest advocate but within weeks Miss Honey was reporting nods when I had only ever seen smiles. And then my kid exploded in a sea of language and expression. Choice is so important and had been our primary concern to this point. I thought I knew her  well so often filled in the gaps but when my “she will never communicate, learn or interact with you” child started to say the unexpected it was a revelation. Her personality began to fully reveal itself and it was a sight to behold.

The aspect of my child’s disability that makes me most sad has nothing to do with her but rather people’s perception of her. Too often people assume having a complex communication disorder means she has nothing to say. That is simply not true. The only thing that was lacking was a reliable and suitable way to say it! As my daughter developed her proficiency with her PODD she showed us her sense of humour. She revealed her observations of life…and reminded us she is always listening…a l w a y s!

Yourdictionary.com defines dumb…”The definition of dumb is unable to speak or someone or something that appears stupid”. Unfortunately many people assume “unable to speak” suggests someone is “stupid”. My pleasure and mission in life is to show those people they are wrong. Thanks to the Miss Honey speechys in our world and a super determined girl we are well on the way.